Alpha Gal Allergies

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OkieGirl
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Date Joined Jul 2012
Total Posts : 2
   Posted 7/24/2012 11:40 AM (GMT -6)   
Hi there :)  I have the Alpha Gal allergies, I have known for about 2 years now.  I have recently started noticing that I ham having intolerence to milk and cheese.  I was wonderin if anyone else out there has noticed the same thing... this allergie blows!

Glenda's daughter
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Date Joined Jul 2012
Total Posts : 7
   Posted 7/31/2012 2:35 AM (GMT -6)   
I have had this allergie for about 10 years now, finally have a name for it. All the research I have done says a total avoidance diet is the best we can hope for. The allergy came from the white spot tick. I am still able to do dairy, but no mammal meat of any kind. Note from my experience, some meds will cause a reaction. Have you had any anaphylatic reactions? What I have read, our allergy can worsen over time. Avoiding ticks and avoiding mammal products seems to be the only safe route. Look up Dr.Scott Cummins at the University of Virginia, there is a forum just for our "Delayed Food Allergy" lots of information.

OkieGirl
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Date Joined Jul 2012
Total Posts : 2
   Posted 7/31/2012 2:16 PM (GMT -6)   
Let's just say that for 2 years I have been able to put a name to it!  My allergies have been going on for about 18 years.  My 1st Allergist said I was allergic to sugar and corn... turns out he was close lol.. the reaction to alpha gal does somthing to the sugar protiens in your blood (think that is how it goes.)  I have read just about everything from the U.of V that I can get my hands on.  It was not till 2 years ago that another allergist that I was seeing I just happened to show him a photo of tick's bite's that I had recieved over Memorial Weekend and I saw him in JULY and still had some of the bites on me...that is what sent him on the alpha gal journey (I thank god almost everyday that this man was smart enough and on top of things cause I was misserable!)  Of corse this was all going down while I was on the no carb diet and eating ALOT of meat and protien lol!!  As far as meds... I have only found one that I have had a reaction to and that was a muscle relaxer named Skelaxton (sp).. my whole skin on all of my body was one large hive!  I was able to control it with Benadryl and another med I keep for itching.  I keep a bag with me where ever I go!  I am totalaly mammal free, but like I said I am starting to get the tummy ugga's (bloating, bad gas, sitting in the bathroom etc...) so I am wondering if that is the start of somthing to come... Question to you.. what is the first thing that ELERTS you that somthing is happening :)  Mine is my ears get real hot and red, and it starts there and works around lol..not funny my it's my sign :).  As far as anaphylatic, I have never had to use MY epie pen I have alway's been able to get to the ER and let them take care of it Thank you lord!!!  It is so nice to hear from sombody else that has this!  UNLUCKY for us, but nice to hear :)... oh and what do you miss most....me...BACON!!.. oh, I had a friend make homade buscuits one morning for breakfast, with out even thinking she lined the pan with a little bit of bacon grease... an hour later I was laying in bed with bad ugga's, but never broke out... I have even had food that was frien in the same oil as mammal meat and had reactions...so I have to be real careful when eating out.  Turns out I don't care if McDonalds chicken nuggets are made of pink foam lol.. at least I can go through the drive and actually eat somthing!.. I have often wondered about putting McDonalds to the "is this real beef" test, but I am too scared :)  I don't know about you but some of people think I am crazy when I say I have this, but my true friends give me all kinds of grief..funny grief cause they know I miss bacon, so anytime they find bacon stuff I get a lot of gag gift's lol..bacon flavored lip balm etc... Good luck in staying mammal free :)..thanks for replying like I said it is nice to talk to someone else :)

couchtater
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Date Joined Jul 2009
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   Posted 7/31/2012 4:36 PM (GMT -6)   
Have you tried Turkey bacon? It's a good subsitute to pork bacon.
Joy
When life throws you lemons....
Pick them up and throw them right back at them! :))

Glenda's daughter
New Member


Date Joined Jul 2012
Total Posts : 7
   Posted 8/1/2012 2:07 AM (GMT -6)   
My first signs are ears start burning, turn beet red then anywhere then my bra and waist band along with the bends of my legs and arms, by this point I look like a swollen tomato and hives cover me from head to toe. I eat turkey bacon and turkey burgers. Use olive oil to fy the bacon or just pop it in the microwave for 3 min for crunchy bacon. I use ground turkey meat (once again fried in olive oil) to make tacos, hamburger helper and chili (excuse spelling), there are many option so we don't have to feel deprived. I have had 4 anaphylatic reactions. 1st was before I knew what I had allergies to, I had two hot ham and cheese from Hardies for hours later I was considered a "scoop and run" to the hosp via ambulance. I am teased too, and yes people look at me like I am crazy when I tell them my allergies, I tell them to avoid ticks or they will be in the same boat with me. I felt like the lone Ranger up until about 6 months ago when my dad read an article by Scott Cummins, soooo relieved to know I'm not alone and in the same since sorry someone else has to go through this too. You may have to go to silk milk and non dairy. Isn't pleasant (almond flavor is better) but at least we can still have cold cereal. LOL.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3536
   Posted 8/1/2012 2:48 PM (GMT -6)   
Hi "gals" and welcome to the forum!  Interesting allergy.
 
1. Does everyone with this allergy get anaphylactic symptoms, or is there a less severe "intolerance" reaction in some people?
 
2. Is there always a tick involved, or is it possible to have this without it, or maybe just not knowing there was a tick bite?
 
Since my most recent round of major surgeries - 3 in early June - I have developed an intolerance to beef.  2 bites is guaranteed to cause me severe nausea and ill feeling, but not anaphylaxis.  I can't eat pork already because of sulfite intolerance.  There is sulfite in beef also, so I may be just getting more sensitive (which is possible) and picking that up.
 
You might try lactose-free milk if you are having trouble with milk and cheese, just to see if it's the milk sugar also.  Lactose is a galactose plus a glucose.  Alpha-gal is 2 galactoses.

Glenda's daughter
New Member


Date Joined Jul 2012
Total Posts : 7
   Posted 8/1/2012 5:23 PM (GMT -6)   
Alpha Gal allergy also known has Delayed Reaction food allergy. The reaction usually occures 4-6 hours after eating. Everything I have read says YES only a tick bite. Since this is such a new discovery, this theory could be disproved.

It isn't all ticks, it is the white spot (deer tick).

Different people react differently. My research did confirm there is no cure, and total avoidance seems to be the only answer. Avoiding any further tick bites could help with the severity of the reaction.

Good luck!

SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 8/2/2012 3:17 AM (GMT -6)   
Alcie said...
Hi "gals" and welcome to the forum! Interesting allergy.


1. Does everyone with this allergy get anaphylactic symptoms, or is there a less severe "intolerance" reaction in some people?



2. Is there always a tick involved, or is it possible to have this without it, or maybe just not knowing there was a tick bite



You might try lactose-free milk if you are having trouble with milk and cheese, just to see if it's the milk sugar also. Lactose is a galactose plus a glucose. Alpha-gal is 2 galactoses.




Please note there is a DIFFERENCE between intolerance and allergic reactions. In my medical training it has been declared the following is Allergic Reactions: Anaphylactic symptoms such as swelling of airway, Hives, Itchy Rash
Intolerance: Stomach discomforts, Bowel Issues, Cramps, Upset Stomach, Gas, So On, Bloating
Allergic Reactions: Needs Medical Treatment (Medications, OTC medications, Pharmacist, Doctor)
Intolerance's: Unfortunately, just dealing with it


my ears get real hot and red - allergic to something attacking the ears

As far as anaphylatic, I have never had to use MY epie pen I have alway's been able to get to the ER - If your airway is closing you are having a SEVERE allergic reaction and use your epi then go to the ER. Why gamble with your life? I did that once with my asthma, and found out if I had came in 30 minutes later I would of died because of how severe my lack of oxygen was. Here's a kicker - I am a Respite Caregiver - yea, I have medical training. I went in to the ER, because my inhaler was not being responsive, and by the time I got there I was repeatedly losing consciousness for brief periods. I knew I was going to go unconscious again, and it wasn't going to be good when I got into the ER. I looked frantically around as no one was at the reception desk, a guy in scrubs walked past me, but saw my frantic behaviour and asked if I needed help. I couldn't speak, as you can't in an asthmatic attack, so I handed him my inhaler because I medically knew there are only two diseases for the medication and treatment is the same. I went unconscious immediately after handing the guy my inhaler. Next I knew I was in a whealchair wearing oxygen, having a full vital work up waking to smelling salts. Still in the waiting room, as you never move a critical patient til they are stabilized. When I stabilized they whisked me around the corner, into the critical wing. Respiratory team was already there for me, and because of my training I knew where they come from - it takes 5 minutes. That is long enough for brain damage to set in, and it did. After finding out I was barely saved I decided to take my asthma seriously and take control of it. I don't want to die whilst being an idiot. I have brain damage because of my idiotic ways, I now need extra oxygen than what is normal during asthmatic attacks, when I am ill, and I can no longer run. I can't get to my patient in time if they code on me to do cpr... I have to walk so I don't set into an instant attack. I have to make sure I stay within feet of them now so I can do my job if anything goes wrong. Now after you hearing my story, what is it your going to do? Continue to not listen to your body? Risk your life? Whatever it is, please do not be totally moronic as I was. It was pretty stupid of me, and now I suffer for a lifetime.

bad ugga's - intolerance

my whole skin on all of my body was one large hive - allergic reaction
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3536
   Posted 8/2/2012 11:06 AM (GMT -6)   
Thanks Smurfy,

My reaction to foods usually starts out with gastroesophageal issues, but often leads to tachycardia. Normally I can get that stopped myself - inderal, valsalva maneuvers, etc., but sometimes I've had a heart rate of 165 for hours and needed to be in the ER. Once it went on so long they did chemical cardioversion. I pass all the heart tests, stress, etc.

My allergist calls it an allergy. She's a lumper, not a splitter. She says allergy or intolerance, they all have to be treated. She helped me find my food triggers by having me keep a journal of my foods, meds, etc and my reactions. I need to back for a visit now that I am having trouble with more foods. I wish my gastroenterologist and my cardiologist would believe food can cause these kinds of reactions.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 3536
   Posted 8/3/2012 6:18 PM (GMT -6)   
You might be able to read the very short abstract at:
 
 
I read the longer version on Medscape, but you can't get there without a password.

cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 8/11/2012 9:14 PM (GMT -6)   
Alice,
Someone mentioned you were on this forum. I had a question related to the GERD forum, and wondered how I could get that to you. I'm new to these forums and not sure the right protocal for asking.

Deb

dadams
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/26/2012 11:33 PM (GMT -6)   
I was wondering if any one was having the feeling of chest crushing indigestion feeling when the are having a reaction?

I was just diagnosed at the beginning of August, but I new that I had the allergy because this was a discussion in my family, my father has been allergic to red meat for about 2 to 3 years & my mom had seen the article on the news & told me about it. I had got my first tick in years in May and had my first reaction after eating a cheap burger from Mcdonald 's. Then about 3 weeks later it was after a cheap burger from Burger King. During this whole time I was eating steak & tacos & not reacting. I went to my allergist requesting to be tested because I had also reacted to all beef hot dogs. Since then I found that I can eat ham, bacon. & sausage but not pork ribs & pork tenderloin. Just last night I decided to try a steak since I was diagnosed w/ alpha -gal allergy. I had my worse reaction.

My reaction starts with itching on the back of my neck and then turns into hives from head to foot. The last 2 times I also have had this almost unbearable indigestion that feels like a vice crushing my chest & spine.

Will I loose bacon & ham too eventually? Is the alpha gal sugar in milk & cheese too or is it just in the meat?

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/27/2012 12:01 AM (GMT -6)   
If you have tachycardia with a bpm at 165 get to the nearest hospital.

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Please keept hat in mind hon :) In all honesty, I'm wondering if you have a chemical sensitivity.. There are chemicals in foods too like fruits for an example, have salicylic acid in them (natural aspirin). Of which, I happen to be allergic too, but I still eat them (I only get hives, and just keep benedryl on hand).
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Chli
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/26/2012 7:24 PM (GMT -6)   
I am new to this...had anaphylactic experience and significant hives 4 weeks ago 6 hrs after eating a small sausage of pork and beef and turkey...the alpha gal tests are positive for mammalian meats...I am so new to this, now nervous about dairy and waiting to be cleared for poultry. I am living on veggies, fish and beans trying to limit bread... I have been exposed to ticks, but not sure what type, although most significant biter was last May...I am very nervous to try anything after E.R.experience with drugs and violent shaking due to adrenaline (epinephrine)...very scary.

Alpha-Gal
New Member


Date Joined Dec 2012
Total Posts : 5
   Posted 12/9/2012 11:28 PM (GMT -6)   
Hey to each and everyone of you! i am an Alpha-Gal....(Gal)....I am trying to get a site up for other alpha gals and folks who are having the symptoms that cant seem to be explained with the hopes of reaching more about this disorder. I have links on the site that will lead you to research info at UVa and the Drs there who found it and named it. It is connected to the Lone Star Tick (Tick with white spot) Please search for ticktalkallergy.com and check out the links to this info and comment on the blog if you like, even though it is still under construction I think you can still get there. If not and you would like to know what info I have please feel free to email me there at carrie "at" ticktalkallergy (dot) com....I feel your pain, I would like to support you andI need your support too!

mammalian meat and dairy free since July 2012......

Alpha-Gal
New Member


Date Joined Dec 2012
Total Posts : 5
   Posted 12/9/2012 11:39 PM (GMT -6)   
Hey to each and everyone of you! i am an Alpha-Gal....(Gal)....I am trying to get a site up for other alpha gals and folks who are having the symptoms that cant seem to be explained with the hopes of reaching more about this disorder. I have links on the site that will lead you to research info at UVa and the Drs there who found it and named it. It is connected to the Lone Star Tick (Tick with white spot) Please search for ticktalkallergy.com and check out the links to this info and comment on the blog if you like, even though it is still under construction I think you can still get there. If not and you would like to know what info I have please feel free to email me there at carrie "at" ticktalkallergy (dot) com....I feel your pain, I would like to support you and I need your support too!

mammalian meat and dairy free since July 2012......

ewith3
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/15/2012 6:24 PM (GMT -6)   
Hello. I was just recently diagnosed with Alpha Gal after an allergic episode. My alpha gal results were apparently quite high. I had a tick bite this summer that caused a lymph node infection - I guess that was the source. Just curious - what are others alpha gal blood test levels? I know a positive is anything above 0.35. Anyone want to share?

Bayouhunter
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 12/28/2012 12:17 PM (GMT -6)   
My results came back as 207.he said it was very high, so far I have had to give up all dairy and anything with gelatin in it. It just sucks!!!! All I can say is me NT the ticks have a life long problem. He said the only reason I did not go into full shock is because they put me on Xanax because they thought I was lying and that it was panic attacks.

logic82
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/15/2013 8:10 PM (GMT -6)   
My husband has this allergy too...(alpha gal). It started out a very slow process. 1st beef than pork, now milk and some cheese. It has been complete avoidance of these. But, there is something really crazy we have discovered. It works for him anyways. There is something in alcohol that counteracts the reaction! Beer...wine, w/e. He was drinking one night and was craving this meat loaf I was making and when we all went to sleep he ate 2 pieces of it and went to bed. No reaction, no upset stomach, no hives...NOTHING! Now that we have discovered this he has been able to eat these meats now as long as he drinks a 6 pack! I am happy for him because he wanted a burger and bacon and steak so badly!
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